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Unfortunately it looks like they are using them to find more excuses for CBT.

I found heart rate monitoring helpful, but I agree it's something that should be used as a tool for helping to learn to listen to the body, and how we use it should be flexible and down to the individual, not regimented. Turning it into a more regimented control app with good behaviour...

I got that, my point was Perrin seems to be claiming its a popular treatment when that figure was probably based on a percentage of a tiny number who had tried his technique, and in it came out worse than pacing or resting which aren't treatments. It's all nonsense.

I got to the bit where it says it was voted 3rd most popular in an MEA survey of favoured treatments and stopped reading.

Further discussion has been moved to: UK: HealthSense, formerly called Healthwatch

Thank you @Ariel for sharing your family's experiences. I'm so sorry you are all suffering so much. :heart:

Since it's a year since the Hilda briefly resumed reporting on the stalled new review process, I've marked the occasion by posting the following on Hilda's talk page...

You're right, @Barry. We pointed all this out to Cochrane in our letter on harms sent on 17th March 2024. And still we wait.

It's self published, and presumably just one individual's ideas. Those claims seem to come straight from the Ostrom book.

I agree, @Sasha. People whose only experience and knowledge of what a local ME service can provide are not necessarily able to suggest something better. We have seen that with the Gladwell and Tyson projects. I think of my local service where the last I heard over a decade ago the OT in charge...

I think you may be misinterpreting the numbers. For example in my case I'm housebound, still effectively shielding. My cleaner tests, masks and doesn't spend more than a couple of minutes in the same room as me. On the rare occasions recently I've had unavoidable contact with others I didn't...

A truly scary situation for health in the USA.

Published in BMC Medicine, 18th September 2024 Diurnal timing of physical activity and risk of colorectal cancer in the UK Biobank Michael J. Stein, Hansjörg Baurecht, Patricia Bohmann, Béatrice Fervers, Emma Fontvieille, Heinz Freisling, Christine M. Friedenreich, Julian Konzok, Laia...

We have some members only polls on symptoms here, here, here and here and more.

Dr Bateman gave a talk to doctors in 2019 about ME including a section on orthostatic intolorance (the inability to be upright). The video and discussion are on this thread: Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda...

More discussion on this thread and others with microclots tag. Challenging the current hypothesis that thrombosis is responsible for the post-COVID-19 condition, 2024, Carson, Davey Smith, Garner et al

For more discussion of microclots go to this thread: The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

Threads on the Dubbo study: Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study, 2006, Hickie, Lloyd et al Contribution of individual psychological and psychosocial factors, Dubbo Infection Outcomes Study, 2019, Cvejic, Hickie et al

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I haven't read most of it, just skimmed and copied headings.